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For me the day began with a walk past eagles with their wings outstretched, catching some rays in the early morning sun. I was heading to a room in London Zoo. In a few hours 40 young carers and young adult carers would turn up ready for a day of discussion, questions and campaigning. The NHS was bringing together important decision-makers such as Simon Stevens (Chief Executive of NHS England), Neil Hunt (Chief Executive of the Royal College of GPs), Wendy Nicholson (Professional Officer School & Community Nursing at Department of Health) and Xane Panayiotou (Department for Education). These decision-makers are involved in areas such as school nurses, GPs and new legislation to give stronger rights to young carers. Others oversaw big chunks of the NHS, such as services for people with long-term conditions and improving patient experience. They were coming to the event to listen to young carers and young adult carers in order to act and improve the NHS for them. Continue reading →

Along with various other charities, I was at a meeting with the Department of Health to discuss the Government’s

upcoming vision for volunteering in health and social care.

One of the first things raised as being most important was that we should treat volunteers like professionals. They should not be viewed as being of lower standard and they and the roles they do should be treated seriously. We all say aye.

Later, and separately, it was pointed out that many people are put off volunteering for organisations because of processes they have to go through. They may have to complete forms about their interests, skills, employment history or go through a Criminal Record Bureau (CRB) check. Some charities will ask for references.

Some said that potential volunteers can be put off by this, maybe even offended that so many questions are being asked of them, when all they want to do is help out a couple of hours a week. Ah yes we all said, this is definitely a problem.

But is this not treating them and the role they will do as equal to paid staff and their roles?

The Princess Royal Trust for Carers and Crossroads Care have campaigned for carers to be treated as equals to health and social care professionals. What they do can be highly skilled and requires training and experience. Again, aye to that.

But we also campaign for friends, relatives, neighbours or volunteers to help carers (if the family want it) because carers can often be struggling alone without any help. This seems reasonable to most.

But by saying you have to be trained and skilled to provide care, are we discouraging people from volunteering to help? Do we encourage the thinking amongst people that there is nothing that they can do?

Now the following facts may be not be caused by such contradictions highlighted above, but they are surely related.

In the Household Survey of Carers 2009/10, 66% of carers said they would need a friend or relative to look after the person they care for if they wanted a break overnight. Of these carers 42% had not actually ever managed a break of two days since they started caring and 16% of carers said that they had nobody they could turn to who would help them take a break.

Now some will say that friends or family or volunteers shouldn’t be the ones providing help, we should be using paid care workers, but that only highlights the hypocrisy of saying that volunteers should be treated equal to professionals. To me, these statistics show there is a need, but I’m not sure how well we’re helping carers to meet that need.

Note: The following post has been contributed by Carole Cochrane, the Chief Executive of The Princess Royal Trust for Carers

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Wednesday 28th July was another hot day in London (well it was for northern based lass). And like many of my London working days it was crammed with various meetings.

The day started with a breakfast review meeting with The Trust’s Director of Fundraising before we both went off to meet with someone who had recently made a significant donation to The Trust (always good to thank in person).

As I say it was a hot day and by the afternoon I was already feeling pretty tired and dishevelled and I had to change into a new set of clothes. Feeling a bit more like a Chief Executive, I headed off to my last appointment of the day which was to launch the Triangle of Care report at the House of Lords.

Tony Baldry MP, Co-Chair of the APPG and a real supporter of carers, was really the person launching the report. I was asked to speak and although I had some points prepared, after talking to carers there I felt that I wanted to speak as a sister of someone with a ‘severe and enduring’ mental health issue.

I talk to so many carers of someone with a mental health issue, who are often worn down with caring and fighting to get good services and I felt that I needed to speak for my parents, my sister and all those other carers who don’t get the chance to do so.

I know only too well the impact my sister’s illness has had on our family unit and in particular on the health of my elderly parents, who are still the ones that pick up the pieces when my sister is ill and again when she is discharged back into the community, sorting out a flat, furnishing etc.

The Triangle of Care report attempts to bring together the carer; the cared for and the professional and get them all working as partners. So many carers tell me they feel invisible when care packages are being put together but are all too often the ones that have to implement and manage the care.

The essence of the document is to clearly identify the six key elements
required to achieve better collaboration and partnership with carers, with good practice examples and resources.

1. Carers and the essential role they play are identified at first contact or as soon as possible thereafter.
2. Staff are ‘carer aware’ and trained in carer engagement strategies.
3. Policy and practice protocols re confidentiality and sharing information are in place.
4. Defined post(s) responsible for carers are in place.
5. A carer introduction to the service and staff is available, with a relevant range of information across the acute care pathway.
6. A range of carer support services is available.

I had a really enjoyable time at the event and spoke to some wonderful carers who I know are hoping that the Triangle of Care becomes everyday practice so their loved ones get the services they so richly deserve.

P.S: had a recent text from my sister who tells me she is really happy – it has been over 25 years since we have heard those words – so I know things are getting better for her and my parents and that is what I am sure those parents that spoke to me on the night long to hear.

Note: This post is from our guest blogger Tony Baldry MP who is Co-Chair of the All Party Parliamentary Group for Carers. Tony Baldry MP made a speech at the meeting of The Princess Royal Trust for Carers held in the House of Commons on Wednesday, 28th July 2010.
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Last week, the Prime Minister repeated his commitment to the Big Society making it clear that its’ success will depend “on the daily decisions of millions of people – on them giving their time, effort, even money, to causes around them”. My whole political life has been predated on this same principle.

However, I am concerned at a potential and unintended conflict between the Coalition Government’s very understandable desire on the one hand to promote the Big Society and the need to cut the budget deficit.

In my constituency in Banbury we have the North and West Oxfordshire Carers’ Centre, member of The Princess Royal Trust for Carers and has been successfully running now for nearly two decades.

Such has been the dedication and commitment of the volunteers that the centre has won the Queen’s Award – one of very few such awards in Oxfordshire. The Banbury Carers’ Centre like the Oxford and South Oxfordshire Carers’ Centres are comprised of a mixture of experienced volunteers and some paid staff, enjoying the financial support of the local community.

They help train carers. They provide outreach services for carers. They provide a place where carers and different types of carers can come and meet, share experiences, unwind and support each other.

As we all know, carers come in many kinds from young carers to very elderly spouses still looking after a much loved husband or wife.

In undertaking this valuable work, for many years the Banbury Carers’ Centre has received funds from Oxfordshire County Council to deliver specific agreed services to carers. The reasons the County Council was procuring these services from Carers’ Centres are exactly the reasons set out by the Prime Minister in support of “the Big Society”; Carers’ Centres and their volunteers are exactly the people who are making a difference, are in contact with other carers and are in the best position to understand, articulate and meet carers’ needs. They are full of people who come together and work together to affect social change and to improve life for carers.

As far as I am aware there has never been a suggestion that the Banbury Carers’ Centre or the other Oxfordshire carers’ centres have failed to meet the objectives with which they have agreed with the County Council. However, the Council has to make savings in their budget.

They are proposing withdrawing their funding from the carers’ centres in Oxfordshire and replacing that service by a telephone call centre, almost certainly run from outside of the county to which carers will be able to call.

Part of the justification of this move, in addition to the need to save money, is an assertion that it will help them reach more carers. However, there doesn’t appear to have been any or any real discussion with the existing Carers’ Centres as to the number of carers that they are already reaching.

I would suggest the issue here is that many people who are carers simply don’t recognise themselves as being carers and if they don’t recognise themselves as being carers, they are not likely to ring a carers’ telephone hotline.

We need a collective effort to help carers voluntarily register themselves as carers so that they are recognised as being carers by GPs or by schools if they are young carers. This requires a sustained campaign in GPs surgeries, in the schools, and in the media to make people ask the question “are you a carer?”

I suspect that for many years GPs haven’t been asking the question of whether someone is a carer, because there has been very little that they could do to support them. However, now that PCTs have funds to support respite care, GPs are in a position to refer carers for respite care and short holiday breaks and for that reason alone, one would hope that every GP practice would know which of their registered patients are also carers.

I think the reality is that for many years central government has used local government to support a whole range of social interventions. Money for carers’ breaks is given in part to PCTs and given in part to local Councils. However, if local government is obliged to save money, they understandably start by reducing funding for those organisations for which they have no immediate responsibility.

However, there are a very large number of active citizens undertaking constructive voluntary work within our community who to a certain extent depend on some funding from local government. An alternative, of course is to allow organisations such as the Banbury Carers’ Centre to bid direct to central government to provide carers’ services.

Here we appear to be bedevilled that Oxfordshire County Council has decided to bundle up all its carers’ contracts into a single contract, thus bringing it within the parameters of the EU procurement directives and requiring compulsory tendering. This makes it much more difficult for local voluntary organisations to bid and appears to run completely counter to the desire for localism and the Big Society.

I think we all have to accept that these are particularly difficult and unusual times. No peace time government has had to tackle a similar financial deficit. We need to develop the Big Society. We need to see how we can best reconcile these two policy objectives. However, to start with we have to recognise and acknowledge that there are some real tensions that need to be worked through.

Note: Following is a blog post from our guest contributor Beryl who is the Development Manager (South East) at Princess Royal Trust for Carers

I was at the launch event of The Princess Royal Carers Out of Hospital Report yesterday afternoon and….it was really exciting! Sounds an odd thing to say about a formal do but it was exciting because everyone there was determined to take practical steps to put the report into action and to improve support in hospitals for carers.

The Royal College of Nursing (RCN), represented yesterday by Dr. Peter Carter, fully endorsed the report. He suggested that RCN work together with The Princess Royal Trust for Carers to make the changes that will improve support carers and families receive in hospitals and at discharge.

Carers, carers’ workers and hospital staff were at the launch to tell us about the partnership work they are already doing to change things for the better for carers. In Swindon, for example, the hospital trust have taken a very practical step towards sorting out hospital systems so that carers can be identified and supported.

Jim, who cared for his partner, a patient in Barnet hospital, told us about the difference it had made to him having the support of a hospital based carers worker. Jim made contact with the worker after seeing a poster in the hospital lift. He even called for the better publicity of information about the support available to carers within and beyond the hospital setting: “Aeroplanes should be up there skywriting it!” he said.

Not sure if we can sort out the skywriting but The Princess Royal Trust for Carers will be continuing to work in partnership with the RCN and with hospital trusts, carers’ centres, carers, health commissioners and policy makers to get the word out on supporting carers and families in hospitals and at discharge and on getting that support in place. I’ll report back to you in a couple of months time on how we’re doing. Meanwhile please do feel free to share the Out of Hospital report key messages and statements of support with your local hospital.

The “Out of Hospital” project included partnership work between carers, Carers’ Centres and hospitals in Barnet and in Swindon. This afternoon carers, carers’ workers and NHS workers from Swindon and Barnet will be at the launch to share the practical tips that they found worked to get everyone acting together to benefit patients and carers and avoid readmissions to hospital.

I’m hoping the launch will inspire those NHS workers who attend to develop their partnership with carers and in turn help them in changing hospital systems and culture. We’ve already received messages of support from the Royal College of GPs and other NHS bodies so that’s a really positive start.

Have a look at the key messages from the report and it would be great if you could share them with other carers, carers’ workers and NHS planners and staff that you know.

I will be back soon to let you know how the launch went, including what the carer presenting at the launch had to say.

Thankfully, the birthday card I got at work yesterday included some humourous messages from colleagues giving me comic relief from the Government’s White Paper on restructuring the NHS in England. The White Paper is obviously important, but it’s just not the most fun read in the world.

In a nutshell, the proposals are:
• GPs will commission the vast majority of all health services for patients and carers meaning Primary Care Trusts (PCTs) will vanish. A NHS Commissioning Board will oversee GP commissioning.
• There will be a new Public Health Service with local Directors of Public Health being appointed jointly with local authorities, who will have new Health and Wellbeing Boards to replace Health Overview & Scrutiny committees.
• Patients should have a choice of providers – so not just NHS organisations
• More information should be shared with patients and carers and decisions taken jointly with health professionals – no decision about me without me

I don’t think the question should be whether GPs being responsible for commissioning is a perfect structure (it really isn’t) but whether it is better than the alternatives. Not everybody seems convinced of that either.

However, proposals for more patient and carer involvement and a new performance framework that focuses on outcomes for patients rather than processes should be welcomed.

This focus on the duties of health services is timely given Barbara Keeley MP’s Bill in Parliament today proposing that all health services should be required to identify patients who are carers or have a care, and consider the carers’ needs. The Bill would also require schools to have a policy to identify young carers – something which we have campaigned on.

The Bill has received support from MPs in the Conservative (Tony Baldry MP), Liberal Democrat (Annette Brooke MP) and Labour parties (Diana Johnson MP + others), plus Caroline Lucas MP of the Green Party. The NHS has a history of neglecting carers and it is imperative that carers are not further forgotten during and after any restructuring. This Bill could ensure that doesn’t happen.

As you may have read in an earlier blog, my boss, Alex Fox is leaving after 10 years of working for carers. In his blog he recounts the progress made in terms of recognition and understanding carers’ issues. What he missed out was the role that he played in bringing this about. Make no doubt about it, there are carers and families who will never know, meet or even hear of him, but there will be many whose lives have been improved because of him.

Individuals can and do make a difference. There are still many issues facing carers and there are still many carers struggling without any help whatsoever but there are also some whose lives have been improved because others have taken action.

For a few years now we’ve been working with the Royal College of GPs (RCGP) to increase GP awareness of carers’ issues. It’s obvious that not every GP in the UK fully understands how they can help carers, but we have been receiving examples of huge improvements. It is clear that some carers’ lives have been changed because a GP has stepped in to help.

To recognise this and to highlight to GPs who are maybe not fully engaged what can be achieved, we have launched a Caring about Carers award with the RCGP. This is a chance for carers and families who feel their GP has made a difference to recognise this and highlighting these successes will hopefully encourage others to try too.

We held our first ever event at a Liberal Democract conference today. It was a joint meeting with the College of Occupational Therapists and proposed greater support for carers and occupational therapists if we are to help people live healthier longer and for people who receive care to live a more independent life.

Sandra Gidley MP (Health Minister) and Paul Burstow MP (Chief Whip and Chairman of All Party Parliamentary Group for Older People) were there with a few other invited guests. It was agreed that greater identification of carers was crucial and that GPs had a large role to play in this. Evidence was given where GP surgeries that have contact with their local Carers Centre identify many more carers than those with less or no contact. We hope that our recently published guide for GPs will increase GPs’ support for carers.

The Green Paper was also discussed with general disappointment at its lack of detail and depth and this was repeated at a meeting I attended with the whole Lib Dem health team and other health organisations. The Lib Dem position on social care is being reviewed but currently could be described as broadly supporting the Scottish model where everybody receives a contribution to their care costs regardless of income, but some may have to top up this contribution with their own funds.

Their policy would inject a further £2bn into social care funding but I think they are looking at finances to see where they could get this £2bn from, given current Government deficits. I spoke to Greg Mulholland MP at the end who agreed to do a web chat about social care when Parliament returns so we’ll keep you posted about that.

Both meetings also discussed the need for commissioners to listen to their communities, service users, carers and professionals about the range of services that are needed. This gave me a perfect opportunity to plug a new guide on Commissioning for Carers that we helped write, which I duly grabbed.

However, the big story at the conference was the speech given by Norman Lamb MP, shadow Secretary of State for Health. He announced that they would scrap Strategic Health Authorities and improve local autonomy of health bodies. I got to discuss this issue of local control with the Lib Dem health team in the context of Primary Care Trusts (your local NHS body) and providing breaks for carers.

The Government have defended this saying that local NHS bodies know their local areas best, so it should be up to them how to spend the money with local people holding them to account. However, PCTs boards are not elected and it is very hard to hold people to account when you do not know how much they have received or what they have spent it on. You cannot have accountability without transparency.

We are currently stuck in no mans land where national government abdicates responsibility to those who we have no control over. We either move to a system where national politicians take more control and responsibility for delivery, or where local bodies are more accountable to local people who are given greater support to getting involved. The Lib Dems prefer the second option, do you?

A few times in the year, I try to whack a wee white ball with an iron stick into a not-so-wee white hole a few hundreds yards away. At golf, I am definitely an amateur. And despite my height, I am even more of an amateur at rugby and as anyone who has seen me chasing balls smacked over the net by my girlfriend, my efforts at tennis could only be considered amateur.

It is strange that in each of these sports the last few decades has seen a change in prestige from amateurs to those paid professionals. It is professionals who now command respect, adulation and all the support that can be offered whilst the poor amateur struggles on a less than level playing field. My grandfather’s beloved Queens Park (an amateur Scottish football team) now languishes in the lower divisions, no longer beating Rangers and Celtic in heroic upsets.

Yet it seems to me that it is the one who does not get paid who most needs our support. It is the person who gives everything of themselves that should receive our helping hand. It is the one who against all odds still steps up to the plate day after day that should be given our aid. But it is clear they are not.

The Dept of Health has advised that paid frontline health and social workers providing personal care will receive the swine flu vaccination, but that carers will not. Even if they provide personal care too. The majority of care and support in this country is provided by carers and many are giving medical and personal care to individuals who would require hospital or residential care if their carer were to become sick. Is it simply because they are not paid that we value them less?

I understand that resources are limited but basing priority on whether somebody gets paid or not is far from being the best way to distribute the vaccine. It is good news that some people living with those who have compromised immune systems will receive the vaccine, but The Princess Royal Trust for Carers and Crossroads Care have written to the Dept of Health urging them to reconsider this vast exclusion of many carers. I will let you know how we get on but in the meantime I suggest that we all become Queen’s Park supporters. C’mon the Spiders!